The Disease Between Symptoms

The longer I work as a neurologist, the more I realise that every answer is a door to another question. Every time I think I have begun to understand something, another door quietly opens. Behind it there is another corridor with more doors. The strange thing is that, before opening the first one, I didn't even know the corridor existed. You don't realise how much remains to be discovered until you've opened just enough doors to see how many are still closed. Perhaps that is one of the reasons I still enjoy medicine as much as I do. It constantly reminds me how much remains unseen.

Lately, one particular question has stayed with me.

It began with migraine, but I don't think it belongs only to migraine.

I've seen it in patients recovering from a transient ischaemic attack (TIA), or minor stroke,  who have made an almost complete neurological recovery, yet hesitate before booking a flight because, quietly, they wonder if it could happen again , perhaps with more devastating consequences. 

I've seen it in people living with epilepsy, whose lives are often shaped less by the seizures themselves than by the uncertainty of not knowing when the next one will come. In people with multiple sclerosis who slowly become experts in listening to every sensation in their own bodies, wondering whether today's numbness or exhaustion is simply part of being human, or the beginning of something else.

I've even seen it in patients whose cancer has been successfully treated, but who still find it surprisingly difficult to imagine themselves six months into the future.

The symptoms matter, because they help us make diagnoses, choose treatments and evaluate whether those treatments are working.

But I have gradually started wondering whether symptoms are sometimes just the easiest part of chronic disease to measure.

Perhaps the harder part is everything that happens in between one symptom and the next. The conversations we begin having with ourselves. The calculations nobody else ever hears. The way one decision quietly becomes a habit until, one day, it simply feels like the way we've always lived.

That thought has changed one of the questions I ask my patients.

Instead of only asking someone with migraine how many headache days they have each month, I have become increasingly interested in asking another question.

What has your migraine quietly persuaded you not to do on the days you don't have migraine?

The answers were rarely  about the symptoms themselves.. They were about something much less tangible. About how illness had quietly started negotiating with the future.

A family holiday that is never booked because what if migraine ruins it. Or perhaps even worse, the holiday that was booked, and became another memory coloured by guilt because everyone else had to adapt yet again. 

Or the things that are almost impossible to explain to someone who has never lived with migraine like how the flickering light through the leaves of a tree on a beautiful spring morning triggers a migraine , or how the shimmering sunlight reflecting on the sea makes you hesitate over that boatride…

 Sometimes the changes are so subtle that they don't even feel like decisions anymore. They simply become the way life is lived. Meals are never delayed. Bedtime becomes sacred. Always triptans in your pocket. Sunglasses become as essential as your keys, even when the sky is overcast. Because experience has taught you that your brain is less forgiving than most.

This is where I find myself hesitating. It would be easy to say that people shouldn't let illness limit their lives. But that would also be unfair. Much of what my patients do is sensible. It is based on years of learning how their own brain behaves. Knowledge can be extraordinarily liberating but at the same time, I sometimes wonder whether fear has a remarkable ability to disguise itself as wisdom. And perhaps one of the hardest parts of living with any chronic illness is learning to tell those two apart.

I don't think medicine talks enough about that. Clinical trials can tell us whether a treatment reduces migraine days. They are much less likely to tell us whether someone finally felt confident enough to promise their child a day at the beach. Or whether they watched the sunlight dancing across the waves for the first time in years without spending the entire afternoon wondering what it might cost them later. Those moments are deeply personal and I can't help wondering whether they sometimes represent one of the most meaningful outcomes of successful treatment. Not because the disease has disappeared. But because it no longer occupies quite so much of tomorrow. 

Perhaps one of the greatest burdens of chronic disease is not always the symptoms themselves. Perhaps it is the quiet negotiation illness begins having with tomorrow. And perhaps, if that is true, we still have many doors left to open.